Ensuring we got the care we needed was physically and mentally exhausting

Early labour

Our first pregnancy went great, community midwife care, support from the mental health midwife and no risks highlighted. At 35.6 weeks we had our birth plan done and were getting ready for the birth of our son.

2 days later, Ewa woke me at 3am when her waters broke. There were no contractions so we calmly made our way to triage where the CTG reading was up and down. We thought it was a connectivity issue but, looking back, was it a sign things weren’t right?

In the morning we were told Ewa had a preterm premature rupture of membranes (PPROM) and labour was likely within 48 hours. I asked about the risk of keeping baby in versus getting him out but they said infection was the only risk. We now know there were others.

Ewa kept saying baby’s movements, while not reduced, felt fainter but they said that was fine and, at a consultant appointment the next day, our worries hadn’t been included in our notes.

There were concerns over Ewa’s anxiety and we did ask how late we could switch to c-section but were told that, once Ewa had laboured, it would be too late which, it turns out, was not the case. Looking back we really don’t feel like we were listened to.

The anxiety wasn’t helping labour progress so, by 4pm, we went home to ‘wait and see’. Two nights later her contractions were an hour apart and we weren’t sure we’d make it to an assessment booked for the following day. We didn’t.

Contractions got closer and the mucus plug came out but the hospital said call back when contractions were closer. By 11.45pm they were every 6 minutes so we headed for hospital.

Half way there Ewa started bleeding and, when I asked when she’d last felt our son move, she couldn’t remember. That’s when I knew there was something wrong.

Losing Aubrey

When the midwife put the doppler on there was silence. She brought in a scan machine and, again, nothing. We didn’t need them to tell us, we already knew. An obstetrician did a confirmation scan and she was so systematic, which felt brutal.

It would be morning before we could see a doctor, by 3am Ewa was 3cm dilated and the midwife told us she could feel the cord under his head. We wondered if that caused our loss.

We considered asking for a C-section but were told to wait for doctors rounds. Before they came Ewa started labour and delivered naturally. Aubrey Thomas was born at 1.19pm weighing 2360g, very small but so very beautiful.

We spent time with him, people visited, we took photographs and hand prints. We wanted to bond but not get to the point we couldn’t let him go so, when Ewa was discharged at 5pm the next day, we left which was so hard. 

But for me, the hardest thing had been holding my son in my arms and feeling no muscle tension, knowing he was there, but not there.

Looking for answers

An external post mortem gave joint cause of loss as cord prolapse and vasa previa with velamentous cord insertion, the umbilical cord was to the edge of the placenta.

We now know that, almost always, with prolapse they see distress and deliver baby in the hours after pre-PROM but also that vasa previa isn’t a standard check. We did feel there was a steer from prolapse towards vasa previa alone in explaining our loss.

The next 24 hours I went into action, registering his death, arranging a funeral and listing the questions we needed answered, but nobody had the answers.

Reaching out to Tommy's

Then I found, and emailed, the Tommy’s midwife support line which has been an invaluable service. Juliette responded and, while clear she couldn’t discuss complaints, she could provide information. 

The Tommy's Midwife answered all my questions then asked about me, which made me cry because nobody else had asked how I was coping.

We got pregnant again at Christmas but, after 5 tests, a digital test and a private HCG we still couldn’t convince ourselves it was real. I don’t think we ever fully expected to bring a baby home.

The anxiety of pregnancy after loss

After a battle we changed hospitals and community midwife trust then had positive 6 and 12-week scans. At the 20-week we asked about cord insertion but were just told it was fine, there was no real reassurance.

We had asked for Tommy’s post-loss reconception advice but were already pregnant when the appointment came through. They offered us a Rainbow Clinic appointment at 23 weeks when we met Prof Alex Heazell. He checked Ewa, he reassured us, he listened and he understood.

A scan at 26 weeks showed baby was small so we were referred to foetal medicine and given a routine, a bi-weekly growth check, then bi-weekly LV and placenta flow checks, so a scan every week.

I read up on SGA (small for gestational age), on the chances of another early labour, and sent questions to Tommy’s. Juliette called and asked how I was before answering all of my questions. Our last appointment with Alex was at 32 weeks and he asked what plan was in place as he knew we’d lost Aubrey at 36 weeks.

So, when we next saw our consultant we agreed Ewa would either be admitted at, or have CTGs from, 36 weeks and we were booked for induction at 37. We ended up having CTGs 3 to 4 times a week from 34 weeks due to anxiety.

Advocating for better care

At 36.2 we had a final growth scan and consultant appointment. We also had a CTG booked for the afternoon but when we checked at reception they said the system had cancelled that appointment because we’d had a scan that day. Thankfully we insisted on keeping that CTG appointment.

Our daughter’s heart rate was under 110. They usually wait 3 minutes until it’s a clinical emergency but the midwife, knowing our story, pulled the alarm bell after just 2. There were immediately 20 people in the room, I just kept saying, ‘I can’t do this again’.

By the time we’d reached the delivery suite Lula’s heart rate had recovered so the consultant said we could wait 24 hours, but we wanted her out. She was delivered at 2.34pm, a cry, then she wasn’t breathing. Ewa had a panic attack as they gave our baby inflation breaths but, with oxygen, she stabilised. She weighed 2360g, the same as Aubrey to the gram.

She went to SCBU but she was strong. She came off high flow after a day, but we were in the unit for 10 days total as she needed to feed without a nasal tube before we could ring the bell and take our rainbow baby home.

The reality of parenting a rainbow baby

On the drive home we kept staring at her. If I’m honest, I kept thinking, ‘Is she dead?’ That question never goes away for parents who have lost a child, it permeates everything.

There is a perception that, now we have Lula, everything is alright, but it’s not. We love Lula so much but, of course, she can’t fix the pain of losing Aubrey.

Some people avoid talking about our loss because they don’t want to upset us, but we want to talk about him. I am close to tears every day, and that’s not about being unable to cope, it’s my way of connecting with him.

We don’t know where we’d be without the support of Tommy’s, and The Lily Mae Foundation, a charity which supports parents who have suffered loss.

We did email Alex and Juliette after Lula arrived, she called us back and told me I’d really advocated for my family which was so good to hear because, ensuring we got the care we needed was physically and mentally exhausting. Care really isn’t something you should have to fight for.